The Financial Burden of Cancer: Are you willing to share your story?

Over the last 25 years, major advancements in cancer diagnostics and treatment have led to significant improvements in clinical outcomes and survival rates. However, the cost of diagnostic procedures, therapy, including chemotherapy, targeted agents, and immunotherapy, as well as the long-term costs throughout survivorship mean people facing a cancer diagnosis also face substantial financial burden. This is sometimes called financial toxicity.

Mayo Clinic would like to interview 5-6 people who are willing to share their story about the financial burden of cancer. Your experience can help other people going through the expense of cancer treatment.

We are looking for real stories of people who have struggled with the financial burden of:
– mounting paperwork
– looming bills
– confusing financial terminology
– gaps in insurance coverage
– financial fears and insecurity

Do you need to be a Mayo Clinic patient?
No! These stories will support an education program and should not be reflective of any particular clinic or hospital.

How will the stories be used?
Parts of your experience may be used to provide real-life stories in an education program to help newly diagnosed cancer patients.

How can you participate?
– You can participate by phone, in writing or in person. You choose:
– Interview by phone.
– Provide your story in writing via email.
– If you live close to Rochester, Minnesota or Phoenix, Arizona, you might be invited to come to a Mayo Clinic video studio to share your story on camera.
– If you live anywhere else, you might be invited to record an audio version of your story via phone or Zoom.
– Your story may be used in a script to be read by someone else.

If you would like to participate, please post a comment below or private message me at @colleenyoung. Share some of your experience below.

Have you ever been confused by health insurance or billing terminology?
Have you ever wondered, “what’s a deductible, what’s an out-of-pocket maximum?
Have you ever been fearful for your financial security because of cancer treatment costs?

Interested in more discussions like this? Go to the Cancer: Managing Symptoms group.

Financial burden is a serious side effect of cancer treatment, one that doesn't often get openly discussed. So thanks for this topic! I'm sure my story is one OF a million others. So far I've been blessed with only having to endure the income loss that comes from unexpectedly early "retirement" and Cobra insurance premiums after being diagnosed with a cancer that at this time is not curable, but thank God is manageable. But soon to be 65, I'm looking into Medicare and I'm very concerned about spiraling costs. Of special concern is post transplant meds, and sadly, my husband has just received a cancer diagnosis too. Our future is uncertain on so many levels. My heart goes out to everyone facing these battles, and paying emotionally, physically, and financially.

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@katyrae

Financial burden is a serious side effect of cancer treatment, one that doesn't often get openly discussed. So thanks for this topic! I'm sure my story is one OF a million others. So far I've been blessed with only having to endure the income loss that comes from unexpectedly early "retirement" and Cobra insurance premiums after being diagnosed with a cancer that at this time is not curable, but thank God is manageable. But soon to be 65, I'm looking into Medicare and I'm very concerned about spiraling costs. Of special concern is post transplant meds, and sadly, my husband has just received a cancer diagnosis too. Our future is uncertain on so many levels. My heart goes out to everyone facing these battles, and paying emotionally, physically, and financially.

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@katyrae Your story is one of so many, as you said. But, it does help us to hear these other stories, and how people have coped. My husband had a transplant 5 years ago, and under his old employer's insurance, ongoing medications were a piece of cake. Moving to Medicare, he got sticker shock! I was able to gently remind him, he never understood how good he had it under the group insurance! When I first became eligible for Medicare, an advocate with the Area Agency on Aging encouraged me to think to the future, and get a PPO supplemental plan plus encompassing prescription plan. I followed her sage advice, and have seen my health issues multiply [failing kidneys plus blood cancer] but costs are still manageable at this time.
Ginger

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excellent idea…………………….also survival stories would be greatly appreciated. thanks

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@mountain009

excellent idea…………………….also survival stories would be greatly appreciated. thanks

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Hi Mountain009, happy to share survivor stories with you. What type of cancer do you have?

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@gingerw

@katyrae Your story is one of so many, as you said. But, it does help us to hear these other stories, and how people have coped. My husband had a transplant 5 years ago, and under his old employer's insurance, ongoing medications were a piece of cake. Moving to Medicare, he got sticker shock! I was able to gently remind him, he never understood how good he had it under the group insurance! When I first became eligible for Medicare, an advocate with the Area Agency on Aging encouraged me to think to the future, and get a PPO supplemental plan plus encompassing prescription plan. I followed her sage advice, and have seen my health issues multiply [failing kidneys plus blood cancer] but costs are still manageable at this time.
Ginger

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Thanks Ginger! Yes I have met with a Medicare broker and she is directing me to include Supplemental coverage, but she said she needed to do more research before we finalize because even with prescription coverage she has a client with outrageous post transplant drug costs. 😳 I'm pretty nervous after hearing that. 😬
Thank you for sharing part of your story and the recommendation. I wish you well on your health and financial journeys ❤🙏🏼🙏🏼🙏🏼

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@katyrae @gingerw , yep, there are as many financial toxicity stories as there are cancer journeys. Here is a snapshot of mine. Don’t get me wrong, I am incredibly blessed to have decent insurance thanks to my husbands lengthy military service. I was in my 30s, strong as an ox, working 16 hours a day building up my business and planning for an easier financial time. Bam, I have aggressive cancer, I was already at financial ruin when my husband got multiple myeloma 6 years later. His savings and retirement gave us the ability to get him two stem cell transplant and continuing care for his myeloma. We are blessed to be alive but I have long since given up any sense of hope for financial security.

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@auntieoakley

@katyrae @gingerw , yep, there are as many financial toxicity stories as there are cancer journeys. Here is a snapshot of mine. Don’t get me wrong, I am incredibly blessed to have decent insurance thanks to my husbands lengthy military service. I was in my 30s, strong as an ox, working 16 hours a day building up my business and planning for an easier financial time. Bam, I have aggressive cancer, I was already at financial ruin when my husband got multiple myeloma 6 years later. His savings and retirement gave us the ability to get him two stem cell transplant and continuing care for his myeloma. We are blessed to be alive but I have long since given up any sense of hope for financial security.

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I appreciate your husband's service, both of your health struggles, and in spite of this heartbreaking story, I especially appreciate your your acknowledgement of blessings. May your heart continue to lift you up as you navigate these challenges 🙏🏼❤

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@colleenyoung

Hi Mountain009, happy to share survivor stories with you. What type of cancer do you have?

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mutiple myloma….recently diagnosed a few months ago. would like to know how others have been coping and adjusting to the new lifestyle. also miracles that have transpired the lives. is there a group that connects on a reguar basis for M M…………….thanks Colleen. Have a great weekend.

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@mountain009

mutiple myloma….recently diagnosed a few months ago. would like to know how others have been coping and adjusting to the new lifestyle. also miracles that have transpired the lives. is there a group that connects on a reguar basis for M M…………….thanks Colleen. Have a great weekend.

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@mountain009 There is a discussion under the Blood Cancers and Disorders group for mm and other related topics you might find interesting. https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/

And, welcome to Mayo Clinic Connect! There are a lot of people here, we each have our own stories, but we are so similar. I am an active mm patient. What has your doctor decided is the best treatment plan for you?
Ginger

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That is an excellent idea for educational program.

I had decent insurance at the time, an employee retiree insurance plan. Though expensive, it had good coverage once I got through initial problems with pre approvals. And, Mayo was in network so did not have to worry about finding a provider in network. I do not think I am candidate for interview because I would never say I was in hardship. I had savings to cover the deductibles until I reached my out of pocket max for year. One year I hit my max out of pocket in January.

But the dealing with insurance companies was almost as stressful as the original cancer diagnosis.

Few things most frustrating:
– Pre approval for some tests, insurance originally denied MRIs. I had both insurance and Mayo's pre approval phone number on speed dial. Being stuck between providers orders and insurance company had me in tears many nights.
– Keeping track of visits / bills / EOBs / etc…. I spent lot time doing spreadsheets to track expenses.
– Now I am on Medicare and as previous members have mentioned the drugs costs are outrages compared to previous plans. I have learned hints from Mayo Connect on alternative to get drugs covered like GoodRx.

Beside patients, might be helpful for this education program to have someone from Mayo billing and insurance company also be interviewed to provide advice.

Laurie

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I moved to a new state three years ago to be closer to family after a very serious illness (abdominal abscess). During that hospitalization in my home state, an ultrasound showed a small tumor in my right breast. I had surgery and arrangements were made for follow-up care and treatment in my new state. I went in for my first appointment at the new venue, a hospital/cancer care center in a rural area, 45-100 miles from major medical facilities. At the cancer care center, one of the first interviews I had was with the financial office. Fortunately, I have Medicare and a good supplemental plan. But, out of curiosity, I asked what would happen if I just had Medicare and could not cover the balance. I was told – very nonchalantly – that they couldn't treat me. This is an area with a high poverty rate. I left wondering about what happens to those seniors who can't afford the co-pays.

I also second Laurie's comment about keeping all papers, bills, etc. Several years ago, I had a Dexascan to check for osteoporosis. During the pre-scan billing/financial interview, I was told that the cost would be $525.00 and that I was responsible for 20%. I paid that amount before I had the scan. Several weeks later, I received a bill for $2,100 for the scan. I called the hospital and kept getting the run-around. No, it was not the radiologist who read the scan (I paid that separate bill). No, I had no other tests. Etc., etc., etc. Finally, I spoke to the supervisor of the collections department. I told her that I had a copy of the agreement that stated that I was responsible for 20% of the $525.00 cost, that I had paid that cost, and that I would be more than happy to send her copies of the form I signed and the canceled check. The moral of the story: keep your paperwork! And, although it may be difficult and frustrating, be your own advocate!

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Medical costs also depend on where you live. Massachusetts, for example, has subsidized health insurance coverage for everyone. Also, there are many states that have expanded Medicaid to cover many with low income.

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